Infants & Young Children

Vol. 21, No. 4, pp. 256271

Copyright c
2008 Wolters Kluwer Health | Lippincott Williams & Wilkins
Communicating About Autism
Decreasing Fears and Stresses
Through Parent-Professional
Partnerships
Larry A. Gray, MA; Emily R. Msall, MA;
Michael E. Msall, MD
There is increasing public and healthcare provider awareness about the early signs and develop-
mental challenges of children with autistic spectrum disorders (ASDs). Healthcare professionals
are guided by several major policy statements regarding the diagnosis and management of autism.
There remain substantial gaps between these guidelines and families needs during the diagnostic
process. This article provides a developmental and behavioral perspective for the professionals
who desire to find guideposts in task of supporting families throughout the diagnostic process of
autism. We illustrate the diversity of the ASDs using the International Classification of Function-
ing, Disability and Health Model and describe developmental and behavioral perspectives about
the autism diagnostic process. Our overall goal is to enhance parent and professional collabora-
tion in promoting the establishment of medical homes, accessing the highest quality developmen-
tal assessments, and implementing comprehensive supports for parents of children with ASDs.
Key words: autistic spectrum disorders, counseling, family supports, functioning
T
HERE is increasing awareness about the
early signs and developmental challenges
of children with autistic spectrum disor-
ders (ASDs) (Chakrabarti & Fombonne, 2001;
Fombonne & Chakrabarti, 2001). Major pol-
Author Afliations: Sections of Developmental &
Behavioral Pediatrics and Community Health
Sciences, University of Chicago Comer Childrens
Hospital, Chicago, Illinois (Dr Gray and Ms Msall);
and Institute of Molecular Pediatrics and Kennedy
Center on Mental Retardation and the LaRabida
Childrens Hospital, Chicago, Illinois (Dr Msall).
The authors acknowledge Dr Peter Smith, Melissa Gray,
CPNP, and the University of Chicago Early Intervention
Team who provided feedback and a creative team ap-
proach to advocating for quality care pathways and
family supports. This article is dedicated to Charley
Blondis who taught all of us the value of being an opti-
mal family member of a sister with genetic and autistic
spectrumchallenges. His untimely death highlighted the
gaps between a culture of violence and a community of
caring.
Corresponding Author: Larry A. Gray, MD, Section of
Developmental & Behavioral Pediatrics, University of
Chicago Comer Childrens Hospital, 950E 61st St, SSC
Room 227, Chicago, IL 60637 ([email protected]).
icy statements by the American Academy of
Pediatrics and the National Academy of Sci-
ences have provided a template for widely
disseminated state-of-the-art strategies for di-
agnosis and management (Committee on Chil-
dren With Disabilities, 2001a; National Re-
search Council Committee on Educational In-
terventions for Children With Autism, 2001).
However, there remain substantial gaps be-
tween these guidelines and families goals
of feeling supported and accessing quality
and comprehensive early childhood services
(Anders & Gardner, 2003; Renty & Roeyers,
2006). The purpose of this article is to pro-
vide developmental and behavioral pediatric
perspectives for healthcare professionals on
ASDs with respect to communicating the de-
velopmental diagnosis, explaining medical ad-
vances to families, and providing ongoing fam-
ily supports. We build on the International
Classification of Functioning, Disability and
Health (ICF) framework of enablement, func-
tional assessment, and child and family well-
being (World Health Organization, 2001). In
approaching the developmental diagnosis of
256
Communicating About Autism 257
autism, we strive to begin a dialogue about
the process of developmental diagnosis in
the setting of a childs strengths and chal-
lenges while addressing the complex hopes,
fears, stressors, and typical lack of family sup-
ports. In addition, we discuss some of the
strengths of a developmental diagnostic ap-
proach that emphasizes a spectrum of out-
comes and possibilities as well as some of
the pitfalls of a categorical diagnosis, particu-
larly when families in desperation try comple-
mentary interventions that may have adverse
effects. Our goal is not to review the com-
plexity of accepted and/or alternative treat-
ments, as this has been recently done by the
National Academy of Sciences (National Re-
search Council Committee on Educational In-
terventions for Children With Autism, 2001)
and Hyman and Levy (2005), but to highlight
how the primary care provider positively im-
pacts the diagnostic process and how ongo-
ing family supports can be provided as fami-
lies negotiate the complexity of management
in the birth-to-3 and early preschool years. In
this way, we begin to develop both problem-
solving strategies and approaches essential
to optimizing health, development, and func-
tional competencies.
ADVANCES IN PEDIATRICS AND
DEVELOPMENTAL MEDICINE
Major advances in pediatrics, child devel-
opment, and developmental neurosciences
have enhanced our understanding of children
with autism (Bristol, McIlvane, & Alexander,
1998). These advances have included the
prevention of neurodevelopmental seque-
lae in children with phenylketonuria (PKU).
PKU is an inborn error of metabolism
whereby children fed milk or natural pro-
teins develop autism and developmental
disabilities. Through specialized nutritional
interventions, requiring both metabolic for-
mulas and biochemical monitoring, children
are severely restricted in their natural protein
intake. Children with PKU cannot drink cow
or soy milk or eat cookies, crackers, hamburg-
ers, ice cream, pizza, cheese, hot dogs, cold
cuts, or cake. The special protein formula pro-
vides the equivalent of a liver transplant and
dialysis machine. In all 50 states, screening for
PKU takes place in newborns whereby, after
confirmatory biochemical analysis, a special-
ized biochemical formula is started.
Major progress in immunizations has led
to the near elimination of congenital rubella,
measles encephalitis, and Haemophilus
influenzae meningitis and resulting postin-
fectious developmental disabilities including
ASDs (Fombonne & Chakrabarti, 2001;
Goldston, Gruenberg, & Lewis, 1986; Halsey,
2001; Halsey, Hyman, & Conference Writ-
ing Panel, 2001). Prior to these vaccines,
substantial numbers of children developed
intellectual disability as well as neurological
disorders.
Neurodiagnostic advances have included
the early detection of visual and hearing dis-
orders, communicative and social develop-
mental screening tools for evaluating parental
initial concerns, and specific assessment
scales for communication, play, social behav-
iors, and adaptive skills (Ozonoff, Rogers,
& Hendren, 2003). Molecular genetic ad-
vances have included detection of fragile
X syndrome, expanded banding karyotypes
and FISH analysis for regional hot spots es-
pecially on chromosomes 15 and 7, and the
genetic markers for the Rett syndrome and
the tuberous sclerosis complex. The former
is an X-linked dominant disorder whereby the
MECP mutation impacts on a girls ability to
learn purposeful hand skills and communica-
tive skills. The latter is an autosomal dom-
inant neurogenetic syndrome with complex
seizures, difficulty learning language, and so-
cial skills, and with more than half of the
children meeting criteria for ASDs. Despite
these molecular advances, most children with
other neurodevelopmental disorders includ-
ing autism cannot be given an exact etiologic
explanation.
Research networks have been established
by National Institutes of Child Health and
Human Development and the Centers for Dis-
ease Control and Prevention to understand
the epidemiology, genetic and environmental
258 INFANTS & YOUNG CHILDREN/OCTOBERDECEMBER 2008
Table 1. Stressful myths and autism
Myth Autism is caused by immunization of vulnerable children.
Reality Children not immunized with rubella, measles, mumps, hemophilic influenza,
pneumococcal, and pertussis vaccines have high rates of developmental disabilities
including deafness, blindness, cerebral palsy, epilepsy, and autistic spectrum disorders.
Myth Autism is a mental illness.
Reality Autism is a developmental disability impacting on understanding and use of language,
complex learning, and social communication
Myth Autism is caused by problems during labor and delivery.
Reality Prematurity and neonatal complications have not been scientifically linked to autism.
Major known etiologies associated with autism include phenylketonuria, tuberous
sclerosis, congenital rubella, fragile X syndrome, chromosomal disorders, and severe
retinopathy of prematurity.
Myth Children with autism cannot learn.
Reality Children with autism have strengths in motor skills, fine motor manipulative skills,
nonverbal intelligence, and basic adaptive skills. There is a range of communicative,
cognitive, and complex adaptive abilities. All children with autism learn.
Myth Autism is caused by poor parenting.
Reality Autism is a neurobiological disorder whereby brain systems integrating language,
complex learning, and social communication are underdeveloped.
Myth Experimental alternative medical treatments involving specialized diets, megavitamins,
and natural therapies can cure autism.
Reality Autism is not caused by food, allergies, or malabsorption. The best treatments for autism
are special education programs that build on a childs strengths, provide family
supports, and comprehensively address communicative, learning, and behavior
challenges. Children with autism with gastrointestinal concerns should receive
competent pediatric care.
Myth There is no role for pediatric medicine for children with autism.
Reality All children require a medical home that monitors growth and development, identifies
sensory, neurological, and health conditions that can interfere with progress, helps set
comprehensive goals that optimize adaptive functioning, and advocates for proactive
community programs that provide quality family supports.
etiologies, and developmental processes
involved in children with autism (Tager-
Flusberg, Joseph, & Folstein, 2001). In
addition, clinical research networks of mul-
tidisciplinary professionals and specialized
university-affiliated centers of excellence
have developed to explore advances in
psychopharmacology, communicative and
developmental interventions, and alternative
medicine treatments (Arnold et al., 2000; Levy
& Hyman, 2002; Rogers, 1998). This systemic
collaboration offers the promise for scien-
tific advances, but has not quieted several
common misconceptions that exist regard-
ing children with autism. Table 1 provides
a list of some of the most frequent myths
and the evidence-based reality that defines
sources of family uncertainty.
There is also another major myth that there
is an explosive epidemic of autism due to
childhood immunizations (Nelson & Bauman,
2003; Murch et al., 2004; Offit & Jew, 2003).
This leads to both suspicion of medicine
and failure to understand that the prepon-
derance of evidence supports the benefit
of immunizations for the prevention of ill-
ness in children with autism and preventing
both autism and severe disabilities in young
children. For example, without rubella vac-
cine, the United States would experience
Communicating About Autism 259
epidemics of congenital rubella. Prior to this
vaccine, as many as 11 000 fetal deaths and
2000 neonatal deaths occurred because of
congenital rubella. In addition, more than
20 000 newborns were affected with the con-
genital rubella syndrome (Goldston et al.,
1986). The sequelae of this syndrome in-
clude blindness in 10%, deafness in 50%,
autism in 25%, as well as mental retarda-
tion, epilepsy, and cerebral palsy (Chess,
1978). Rubella vaccination prevents these epi-
demics. Prior to measles vaccine, significant
numbers of children died from measles pneu-
monia and measles encephalitis. In 1923,
more than 10 000 deaths were reported in
1 year because of measles. Between 1950
and 1962, almost 500 children per year died
of measles (Goldston et al., 1986). In 1982,
after a decade of immunization control ef-
forts, there were 2 deaths. Approximately 1 in
1000 children with measles develops measles
encephalitis and more than 50% have dev-
astating long-term sequelae including autism
(Benda, 1952). In an era where the promise of
neuroscience has not yet brought newrestora-
tive treatments, immunizations are the best
way to prevent both autism and other devel-
opmental disabilities.
A MODEL FOR ASSESSING ENABLEMENT
AMONG CHILDREN WITH ASDs
The World Health Organization (2001) pro-
posed a strengths- and supports-based model
framework for describing individuals with dis-
ability. The ICF model describes a childs
health and well-being in terms of 4 compo-
nents: (1) body structures, (2) body func-
tions, (3) activities, and (4) participation.
Body structures are anatomical parts of the
body, such as organs and limbs, as well as
structures of the nervous, sensory, and mus-
culoskeletal systems. Body functions are the
physiological functions of body systems, such
as digestion and respiration, and also include
psychological functions such as attending, re-
membering, and thinking. Activities are tasks
done by children, including learning, com-
municating, walking, carrying, feeding, dress-
ing, toileting, and bathing. In older children,
these tasks include reading, preparing meals,
shopping, and washing clothes. Participation
means involvement in community life, such as
relationships with peers, going to school, and
recreational activities.
The ICF model accounts for contextual fac-
tors in a childs life, including environmental
and personal factors. Environmental factors
include policy, social and physical facilitators
and barriers, positive and negative attitudes
of others, legal protections, and discrimina-
tory practices. Personal factors include age,
gender, interests, and sense of self-efficacy. A
variety of preschool scenarios using the ICF
model are illustrated in Table 2 for preschool
children with ASD. These scenarios include
a 1-year-old girl with infantile spasms sec-
ondary to tuberous sclerosis complex, 2-year-
old boy who is nonverbal with autism, a
3-year-old girl with blindness and develop-
mental regression, and a 4-year-old boy with
fragile X syndrome, challenging behaviors,
and autism. The ICF model explicitly mea-
sures functional strengths, social role activity,
community participation, and environmental
facilitators.
THE SPECTRUM OF AUTISM AND
RELATED PERVASIVE DEVELOPMENTAL
DISORDERS
Over the past 50 years, autism has been
diagnosed using different labels and criteria.
We currently support the term ASD to
encompass the formal categorical diagnoses
of autistic disorder, pervasive developmental
disordernot otherwise specified (PDD-
NOS), and Aspergers syndrome. Currently,
the 2 standardized criteria for diagnosing
these ASDs, DSM-IV and ICD-10, are similar
(Volkmar & Pauls, 2003). Core diagnostic
features include impairments in communi-
cation and social interaction coupled with
restrictive and stereotyped patterns of be-
havior, interests, and activities. Onset is in
the preschool years, with delays in language
understanding and use, delays in joint at-
tention and nonverbal skills, symbolic play
260 INFANTS & YOUNG CHILDREN/OCTOBERDECEMBER 2008
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Communicating About Autism 261
difficulties (ie, pretend play), and difficulty
with social interactions with parents and
peers. Although current reviews mandate a
medical evaluation for autism (Committee
on Children With Disabilities, 2001b; Filipek
et al., 2000), many children do not have an
associated or causative medical condition
(Fombonne, 1999). The medical differential
diagnosis of autism includes global develop-
mental delay, developmental language disor-
ders (DLDs), and severe sensori-neural hear-
ing impairments. There are also many rare
neurogenetic disorders that impact on higher
cortical functions including abstraction,
problem solving, understanding viewpoints
of others, information processing, and regula-
tion of attention (eg, too short, too long, too
inflexible) (Rapin, 1997). In addition, among a
subset of children with language regression, a
specific epilepsy pattern is present and called
the Landau-Kleffner syndrome (Rapin &
Katzman, 1998).
Some uncommon medical etiologies asso-
ciated with autism include untreated PKU,
tuberous sclerosis complex, retinopathy of
prematurity, congenital cytomegalovirus in-
fection, and fragile X, Lesch Nyhan, and
Moebius syndromes. In addition, several
genetic disorders such as Down, Prader-
Willi, Angelman, and Williams syndromes and
Duchenne muscular dystrophy have higher
risks for ASDs. The lesson is not that all chil-
dren with Down syndrome or Duchenne mus-
cular dystrophy manifest behaviors consistent
with ASD, but that among individuals with
developmental and genetic vulnerability (ie,
Down syndrome or Duchenne muscular dys-
trophy), higher rates of classical autism are
found than the population prevalence of 1
to 2 per 1000 (Yeargin-Allsopp et al., 2003)
and the ASD prevalence of 4 to 6 per 1000
(Szatmari, 2003; Yeargin-Allsopp et al., 2003).
EPIDEMIOLOGY OF PRESCHOOL
CHILDHOOD DISABILITIES
There are improved tools for early recogni-
tion and increased awareness of the preschool
presentation of children with ASDs. With
expanded definitions of the autistic spec-
trum, there are more individuals who do not
have the classical comorbidities of mental
retardation/intellectual disability. By includ-
ing Aspergers disorder in the autism spec-
trum, there is increased awareness of the so-
cial skill and motor coordination impairments
that impact on school-aged children with
learning disorders. Lastly, including preschool
children with challenging behaviors and com-
municative and attention disorders as children
with autistic spectrum disorder (PDD-NOS)
substantially increases the number of children
eligible for accommodations (504 Plans) and
special education services (individualized ed-
ucation programs). Thus, to understand the
changing epidemiology of preschool commu-
nicative, developmental, and neurobehavioral
disorders, one must understand the back-
ground prevalence of communicative and
cognitive disorders in early childhood.
Communicative impairments associated
with developmental disabilities can be clas-
sified in terms of severity (high, low) and
prevalence (high, low) (Accardo, 2007). Im-
pairments with high severity and low preva-
lence include classical (Kanners) autism (12
per 1000) and significant intellectual disabili-
ties (IQ < 5055) with a prevalence of 5 per
1000. Those with lowseverity and high preva-
lence include mild intellectual disabilities
(30 per 1000), language disorders (100 per
1000), and learning disabilities (70100 per
1000). It is because of these latter categories
that as many as 20% of school-aged children
may qualify for special education accom-
modations. Mild intellectual disabilities are
defined as an IQ of 55 to 70, with adaptive
skills more than 2 SDs below the mean,
and are often detected in kindergarten and
early elementary grades. These children are
independent in communication skills and all
activities of daily living. Reading and writing
skills usually advance to a fifth-grade level
before leveling off. Children with moderate
intellectual disabilities ultimately have IQs
of 40 to 55 and present with preschool lan-
guage delay that later is diagnosed as a more
complicated disability. These children are
262 INFANTS & YOUNG CHILDREN/OCTOBERDECEMBER 2008
Table 3. Language skills among children with communicative disorders
a
Developmental High-functioning Low-functioning
language disorder autistic disorder
b
autistic disorder
c
Single words
d
18 (8.3) 17 (10.5) 20.4 (13.1)
Phrases
e
27.2 (9.4) 29 (11.7) 36 (16.3)
Intelligibility 30 (10.8) 29 (12.3) 30.6 (17.2)
1-Step commands
e
23.4 (9.4) 33 (12.5) 37.4 (14.7)
a
Values represent age in months with (SD).
b
Nonverbal IQ > 80.
c
Nonverbal IQ < 80.
d
Significant difference between groups P < .05.
e
Significant difference between groups P < .001.
independent in all activities of daily living and
eventually able to communicate basic needs
to a caregiver. The major sequelae of this
group of disorders are difficulty in complex
academics, especially in reading paragraphs
and writing book reports. A key question is:
What are the differences in diagnosis and
developmental outcomes among children
with cognitive, language, and ASDs?
Rapin led a multisite multidisciplinary
project whose purpose was to investigate the
neurobiologic basis of ASD and related com-
munication disorders, provide a basis for ra-
tional interventions, and improve the train-
ing of professionals who educate and care for
these children (Rapin & Autism and Language
Disorders Nosology Project, 1996). The co-
hort involved 487 children aged 3 to 7 years.
Developmental language disorder (DLD) was
present in 41%, ASDs were present in 36%,
and intellectual disability without autism was
present in 23%. The children were further
divided into high-functioning autistic disor-
ders (HADs; n = 51) and low-functioning
autistic disorders (LADs; n = 125). The high-
functioning group had nonverbal IQs greater
than 80, whereas the low-functioning group
had nonverbal IQs lower than 80. All children
received a comprehensive assessment of neu-
ropsychologic processes including language,
nonverbal intelligence, adaptive behaviors,
academic abilities, and neuromotor skills.
Detailed histories of prenatal, perinatal, and
postnatal events; childhood illnesses; fam-
ily illnesses; developmental milestones; and
growth, physical, and expanded neurologic
examinations were noted.
Several findings were reported. The pres-
ence of developmental disabilities in parents
and siblings was generally not a significant
predictor for DLDs or ASDs. However, in fami-
lies where one child had an ASD, there was an
increased risk for other children to have either
DLDs or intellectual disability. In a smaller
number of families with one child with ASD,
there was a second child with this disorder.
Neonatal problems were generally not predic-
tive of ASD or significantly different between
the DLD and the ASD.
With respect to early developmental mile-
stones, no child with a DLD or an ASD was
a late walker, defined as not walking inde-
pendently at age 18 months. Late walking was
present in 25% of children with global devel-
opmental delay. Difficulty with pretend play
at 36 months occurred in 25% of children
with DLDs, 49% of children with global de-
velopmental delay, and 71% of children with
ASDs. By age 4, only 5%of children with DLDs
could not engage in pretend play whereas
1 in 6 (>15%) of high-functioning children
with autistic disorders and 1 in 6 children
with global developmental delays continued
to struggle with these play skills.
Table 3 illustrates that delays in com-
municating in phrases and following 1-step
Communicating About Autism 263
commands significantly differentiated chil-
dren with ASDfromchildren with DLD. These
findings also highlight why concerns about
communicating in words and phrases and fol-
lowing requests without gestures are key first
signs for the early recognition of autism. Over-
all, children with DLDs performed better in
both receptive and expressive language skills
than children with ASD and low nonverbal in-
telligence. These findings also suggest that en-
hancing communication skills is one of the
key requirements for preschool interventions.
Rapin concluded that most prenatal, perina-
tal, and postnatal events did not differentiate
between DLDs, high-functioning ASD, autism
with intellectual disability, and mental retar-
dation. Developmentally, 31% of the intellec-
tual disability group and 56% of the autism
group with nonverbal IQ less than 80 had
significantly low IQ scores (IQ < 50). This
study replicated findings from the multicen-
ter Collaborative Perinatal Project that peri-
natal events do not play a strong causative
role in autism, intellectual disability, and DLDs
(Nelson, 1991).
A DEVELOPMENTAL AND BEHAVIORAL
PERSPECTIVE
The role of healthcare professionals
Autism and ASDs have received a lions
share of public and media attention. There
is also increased recognition that has con-
tributed to higher clinical and administrative
prevalence rates over the past 2 decades. Al-
though families and research scientists may
differ on the root-causal pathways for this
increase in prevalence (Baird et al., 2000;
Fombonne, 2003) of children either diag-
nosed or currently receiving specialized treat-
ment for ASDs, it is timely that the primary
healthcare professional assumes a leadership
role in guiding and supporting families during
the early diagnostic process.
Primary healthcare professionals, how-
ever, face several obstacles. First, they are
increasingly called upon to screen for autism
and other developmental disorders as part
of the well child visits without adequate
infrastructure for time and reimbursement
considerations (Dosreis, Weiner, Johnson,
& Newschaffer, 2006). Second, although
national initiatives at the Center for Disease
Control and Prevention (Autism Information
Center) and policy statements (Committee on
Children With Disabilities, 2001b; Filipek et
al., 2000) have recommended specific autism
screening tools and diagnostic standards (ICD
10, DSM IV), so far very few publications
have addressed the effectiveness of the imple-
mentation of these strategies. Finally, because
there is no laboratory or blood test for autism,
the diagnosis remains open for subjective
interpretation of even formal diagnostic
standards. However, consensus exists that
expert clinical judgment is more reliable than
algorithm diagnosis in the youngest of chil-
dren (Charman & Baird, 2002). These factors
separately or in combination all serve to add
obstacles and confuse the role pediatricians
and primary care providers play in the diag-
nosis and management of ASDs (Committee
on Children With Disabilities, 2001b).
PRINCIPLES OF THE DIAGNOSTIC
ASSESSMENT
Primary care providers can find guideposts
in this changing landscape by beginning with
the ICF strength-based framework and review-
ing the principles of the early childhood di-
agnostic assessment. One goal of this review
is to provide a bridge for the primary care
provider as the information about the preva-
lence, diagnosis, and optimal management of
ASDs evolves.
Four converging factors regarding the diag-
nosis of ASD highlights the importance of this
review. Improved ability to diagnose ASDs at
earlier ages (Lord, 1995; Moore & Goodson,
2003) is linked with pressure to meet early
intervention or school-based special educa-
tion eligibility requirements and fueled by
emerging information about the effectiveness
of early identification and treatment (Lovaas,
1987; McEachin, Smith, & Lovaas, 1993;
Sheinkopf & Siegel, 1998). However, at the
same time, there is emerging and conflicting
264 INFANTS & YOUNG CHILDREN/OCTOBERDECEMBER 2008
Table 4. Principles of an ICF aligned developmental assessment
a
1. An integrated and functional model of child developmentone that informs how best to help an
individual childmust be central to any assessment and provide a strengths-based framework
for the integration of gathered data.
2. Multiple sources of information about the childs strengths and weaknesses (past and present)
must be solicited during the assessment.
3. The assessment should have a predictable sequence that plays to the childs strengths and taps
his or her weaknesses. This process begins first by building alliances and a relationship with
parents, obtaining a strength-based developmental history, observing child in optimal play, and
functionally assessing areas of weakness.
4. To achieve optimal performance, the child must participate only in an assessment with his or
her most trusted caregivers.
5. The timing of child development and the factors that affect the variation of this timing should be
well known by the multidisciplinary assessment team.
6. An optimal assessment should identify the childs strengths and weaknesses that the child brings
to the next developmental challenge and form the basis for potential intervention efforts if
needed.
8. An optimal assessment should not upset the child or place the child in a deficit-dominated or
vulnerable position.
a
Adapted from Greenspan and Meisels (1996).
information about the long-term stability and
sensitivity of this early diagnostic process
(Charman et al., 2005; Zwaigenbaum et al.,
2006). It is not known which of these factors
plays the dominant influence in the unmet
needs experienced by children with ASD.
Our clinical experience has often reminded
us that the primary healthcare provider is fre-
quently the first to identify and respond to a
familys developmental concern, and it is crit-
ical they understand and play a central role in
overseeing the familys successful negotiation
of the evaluation process. Equally important,
the primary healthcare provider plays an in-
tegrative and educational role for the family
after the diagnostic assessment is completed
and when follow-up with the referral source
is limited.
Based on the work of Meisels and the Zero
to Three Work Group on Developmental As-
sessment, the principles of an optimal de-
velopmental assessment that best serve the
family and primary care provider have been
summarized in Table 4 (Greenspan & Meisels,
1996; Meisels & Atkins-Burnett, 2000; Meisels
& Shonkoff, 1990; Shonkoff & Meisels, 2000).
The best practice components of a devel-
opmental assessment for young child with
delays in communication, social skills, and de-
velopmental competencies should first con-
tain multiple sources of information about the
childs developmental progress and functional
capacities. This requires that not only the par-
ents but also the healthcare providers and,
possibly, the day care providers concerns and
description of the childs strengths and weak-
nesses be part of the diagnostic process. A pri-
mary healthcare provider should be alarmed
on behalf of the family when the referral diag-
nostician does not solicit or accommodate the
developmental history and primary care per-
spective of the child from the previous well
child visits in the diagnostic assessment.
Second, primary healthcare providers
shoulder the responsibility for increased
mandates for developmental screening for
ASD (Council on Children With Disabilities,
Section on Developmental Behavioral Pedi-
atrics, Bright Futures Steering Committee, &
Medical Home Initiatives for Children With
Special Needs Project Advisory Committee,
2006). This responsibility and role increases
Communicating About Autism 265
the primary care providers part in the
developmental assessment process because
collaborative and sequential assessments
are central to any high-quality autism early
identification, assessment, and family support
management program.
Third, as primary care providers and
systems of care become increasing adept in
providing a medical home for children with
ASD and other special healthcare needs, they
need to join with the parents in identifying the
childs current competencies and strengths as
well as the skills the child needs to develop to
continue with his or her developmental pro-
gression. Providing tips for surviving your
childs developmental assessment (Seven
Tips for Surviving Your Childs Develop-
mental Assessment assessed at http://www.
zerotothree.org/site/PageServer?pagename=
ter screen tips) is one way the primary care
provider can remain connected to parents
as they embark on the developmental diag-
nostic process for their child and strive to
manage the childs lifelong condition after
the diagnostic assessment.
Finally, the ultimate goal of developmen-
tal and diagnostic assessments appropriate for
the ICF strength-based model and the med-
ical home is that no parents will suddenly
face as part of the diagnostic process the re-
ality of uncovering a problem that they did
not suspected. When primary care fulfills its
ideal role, parents are heard and supported
up to, during, and after any referral multi-
disciplinary assessment. In addition, the pri-
mary care provider plays an important role
for the parents who have difficulty in relat-
ing the initial behavioral or developmental
concerns with the outcome of a diagnosis of
ASD. Keeping the child and the childs behav-
ior as the central focus of the parents con-
cern and the focus of the diagnostic process
helps parents recognize their childs person-
hood in the diagnosis process. The primary
care providers facilitation of parental obser-
vations after the diagnostic process and un-
derstanding the terms of the diagnosis of ASD
is an invaluable support as parents adjust their
internal viewof their child (Baird et al., 2000).
Even when parents perceive the initial diag-
nosis of ASD as unwarranted and premature,
primary care providers can adopt the work-
ing diagnosis perspective and join with the
family to refine the diagnosis over time. It is
in this context that the National Academy of
Science recommendations are most pertinent.
This committee recommended that all chil-
dren with any ASD, regardless of label or level
of severity, be eligible for special education
services that comprehensively address social,
cognitive, communicative, and learning skills.
The therapeutic nature of this supported diag-
nostic process for parents should not be un-
derestimated (Parker & Zuckerman, 1990) be-
cause it allows the introduction of structured
services and for the priority of early interven-
tion services to address communication and
social skill challenges without driving parents
to risky and unproven alternative treatment
(Hyman & Levy, 2005).
CAUTION ABOUT NONTRADITIONAL
THERAPIES
Parents of children with autism are bar-
raged with promises of miracle cures, drug
therapies, and nontraditional therapies to
cure their child (Nickel, 1996; Tanguay, 2000).
Many times, caregivers are willing to try any-
thing to help their child. Nonethical promot-
ers of nonscientific therapies use common
ploys to seduce desperate parents into trying
their treatments. Some common approaches
include exploiting the natural fear of disease,
preying on the uncertainty about traditional
medical care, promising painless and natural
treatments, and claiming miraculous scientific
breakthrough and developmental cures.
One promise of a scientific breakthrough
was the use of secretin to cure autism. A
case study was reported in the literature
that 1 dose of intravenous secretin costing
more than $1000 successfully eliminated
symptoms in a child with autism (Horvath
et al., 1998). Several scientific studies have
been conducted since the original case study.
One undertaken by Coniglio et al. (2001) in-
volved children aged 3 to 10 years diagnosed
266 INFANTS & YOUNG CHILDREN/OCTOBERDECEMBER 2008
using DSM-IV criteria for autism. The goal
was to determine whether a single dose of
intravenously administered secretin could
improve communication and socialization
skills in children with autism. Subjects were
randomly divided into treatment and placebo
groups. The Childhood Autism Rating Scale
and Preschool Language Scale3 (PLS-3)
were administered at baseline, 3 weeks, and
6 weeks after treatment. In addition, caretak-
ers completed the Parent Perception Survey
and the Gilliam Autistic Rating Scale and
were asked several study-specific questions
including Do you believe your child received
secretin? Have you noticed any changes in
your childs symptoms? Results showed that
children who did not receive secretin made
more communicative, behavioral, and devel-
opmental progress using these standardized
outcome measures.
In another study, Sandler et al. (1999) ran-
domly assigned 60 children aged 3 to 14 years
to either a single treatment secretin group
or a placebo control group. DSM-IV criteria
were used to diagnose autism (Sandler et al.,
1999). If autism criteria were not met, PDD
was diagnosed. Subjects were administered
the Childhood Autism Rating Scale and the
Autism Behavior Checklist at baseline and at
a 4-week follow-up. Again, the children as-
signed to the placebo treatment improved on
these behavioral measures more than the se-
cretin group. To date, there have been sev-
eral other secretin trials involving more than
700 children with autism (Dunn-Geier et al.,
2000; Lightdale et al., 2001; Owley & Steele,
1999; Roberts et al., 2001). In no trial was se-
cretin a miracle cure. However, in all trials, im-
provement occurred over time in all children
with ASDs, thus demonstrating that all chil-
dren with ASDs learn. Despite the lack of evi-
dence for secretins therapeutic use and even
after being presented the studys negative re-
sults, parents continued to ask the study doc-
tors for ongoing secretin treatment.
Primary care professionals need to em-
brace the passion parents demonstrate in their
search for supports to their afflicted child.
Rather than a punitive remark or avoiding a
discussion about an alternative treatment, pri-
mary healthcare professionals can play a pos-
itive role by providing families valuable infor-
mation to evaluate any alternative treatment.
We have found some useful Web sites and
handouts to offer to families when contem-
plating the complex issue of and risks associ-
ated with alternative treatments.
1. http://www.asatonline.org/ (Associat-
ion for Science in Autism Treatment,
n.d.)
2. http://www.autismresearchnetwork.org/
AN/default.aspx (National Institutes of
Health Autism Research Network, 2007)
3. Parent handouts have been developed by
The Autism Program. These include:
a. Current Interventions in Autism
A Brief Analysis at http://www.
theautismprogram.org/autismtreat
ments.asp (The Autism Program,
n.d.-a)
b. Tips for Working With Children
With Autism Spectrum Disorders
at http://www.theautismprogram.
org/tips.asp (The Autism Program,
n.d.-d)
c. Top 10 Things to Remember
When Working With Children With
Autism Spectrum Disorders at
http://www.theautismprogram.org/
top10.asp (The Autism Program,
n.d.-e)
d. Tips for Daily LifeVisiting
the Dentist at http://www.
theautismprogram.org/dentist.asp
(The Autism Program, n.d.-b)
e. Tips for Daily LifeToilet Training
at http://www.theautismprogram.
org/toilet.asp (The Autism Program,
n.d.-c)
ADMINISTRATIVE AND FUNDING
REALITIES
The primary healthcare provider, as the
central figure in the medical home and be-
cause of his or her unique training, interest,
and commitment, is perfectly positioned to
Communicating About Autism 267
understand and support the special family cir-
cumstances that each family brings with a
child who has developmental differences. Un-
fortunately, Medicaid and private party payers
do not value this expertise or commitment
with their reimbursement schemes. Primary
healthcare providers, pediatricians, and nurse
practitioners and family practice specifically
are best positioned to involve family mem-
bers in planning the evaluation of a childs
development. They also foster respectful
communication between parents, referrals to
subspecialty physicians, and allied healthcare
and educational professionals. Helping fami-
lies integrate the different pieces of an assess-
ment for ASDs (genetics, hearing, neurologic,
and educational) is one valuable mandate of
the medical home.
The American Academy of Pediatrics, and
its national medical home initiative (American
Academy of Pediatrics: The National Center
of Medical Home Initiatives for Children With
Special Needs, n.d.), has advocated a model of
primary care delivery that keeps the primary
healthcare professional central to the process
of identification, family understanding, pro-
fessional referrals, and diagnostic assessment
for children with developmental differences.
At the same time, this initiatives at the
American Academy of Pediatrics endeavors to
find political and legal avenues to address the
negative financial setbacks that most primary
care providers risk when they choose to main-
tain this central role for their patients and
families. The American Academy of Pediatrics
has a toolkit as well as updated brochures
to enhance the primary care providers
skills (see www.aap.org). In addition, the
National Medical Home Autism Initiative at
the University of Wisconsin and the Maternal
and Child Health Bureau (MCHB) is evidence,
in part, of the way national organizations and
federal agencies are promoting and providing
technical assistance to pediatric healthcare
providers who desire to work with other
partners in the community to serve children
with autism (Fig. 1).
Adopting the ICF model with a strengths-
and supports-based framework for describing
preschool children with ASD is a perfect
match for primary healthcare professionals. In
collaboration with the larger community of
providers, the key goal is to provide compre-
hensive coordinated and compassionate care
for children and families faced with the chal-
lenges of ASDs.
Building on the ICF framework of enable-
ment, primary care providers will have the
structure to communicate with sensitivity and
mutual respect information about the devel-
opmental diagnosis, explain current medical
understanding of autism to families, and pro-
vide ongoing family support. Only then will
families have the confidence to increase their
requests to primary care providers for guid-
ance about the range of traditional and non-
traditional autistic-specific treatments avail-
able. In addition, this framework allows the
physician to prioritize interventions that pro-
mote child functioning and enhance family
well-being.
The blending of the ICF framework within
the primary care structure of the medical
home can serve to reveal the added value
of decreasing fears and stresses through ef-
ficient parent-professional partnerships. This
added value reflects the teamwork of pro-
fessional and nonprofessional office staff to-
ward family-centered care management and
enhanced communication. These models also
recognize the wide range of differences in
challenges families of children with autism
face and the increased time and effort re-
quired for the ongoing monitoring of the
childs progress and family adaptation.
CONCLUSION
The major need for families is to feel that
their primary healthcare professional listens
to their concerns and understands the multi-
threaded information required for a diagnos-
tic assessment. Parents also need to be contin-
ually supported in accessing comprehensive
systems of early intervention and preschool
education on behalf of their child. It is most
important to view ASD as a developmental
disorder whereby interventions to enhance
268 INFANTS & YOUNG CHILDREN/OCTOBERDECEMBER 2008
Figure 1. National Medical Home Autism Initiative: Key functions and partners (Waisman Center, 2006).
communication, promote adaptive skills, and
build on the childs strengths occur. It is a
dangerous practice to assume that there is a
magic bullet that will dramatically cause the
child to be suddenly typical. Unfortunately,
the complexity of human language and the de-
velopmental neurobiology of autism do no al-
low for cures with injections of miracle drugs
or nutrition supplements (Coury & Nash,
2003; Ozonoff et al., 2003; Volkmar & Pauls,
2003). Instead, ASD allows us to understand
howall children can benefit fromcomprehen-
sive and quality supports that enhance com-
munication, adaptive skills, and functional in-
dependence at home and in the community. If
the parent or the child experience challenges
that are too demanding or out of control,
they will not understand the current behavior
and educational technologies that can make a
difference (Rogers, 1998; Siegel, 1996, 2003;
Smith, Eikeseth, Klevstrand, & Lovaas, 1997;
Wetherby & Prizant, 2000; Wing, 2001). The
role of the physician is not to be an expert on
all educational practices but to know the hard
task of parenting children who are motorically
able but communicatively challenged and be-
haviorally unpredictable. Attention to family
stresses and daily management supports can
make a difference at home, school, and in the
community. In this way families can undertake
the multidimensional management strategies
that promote functional, communicative, so-
cial, and adaptive skills. They then can cele-
brate with professionals the strengths of their
childs unique way of experiencing the world
and set goals that promote steps to indepen-
dence, and when challenges persist, know
they will not be abandoned.
Communicating About Autism 269
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